Medical-technical innovations are great, but they often suppress a conversation about pain and suffering says Tessa Roberts-Smorenburg, care ethicist at the Antoni van Leeuwenhoek Hospital Amsterdam (NL)

When confronting a life-threatening illness like cancer, the stakes are high. Treatment, with its potential for a cure – or not – alters one’s perspective on life. Survival takes precedence, and the journey proves unpredictable. Practice shows that it is unruly.

Patients navigate challenging treatments with frequent hospital visits, and they undergo interventions that cause serious side effects, leaving less time to be in touch with family and friends. Each patient is unique, raising the question of what constitutes “appropriate care” ((1)).

To manage this complexity politicians address affordability, effectiveness, and quality of life. However, the absence of a discourse concerning pain and suffering is disconcerting. The subject of death is overlooked, although it is present like the proverbial elephant in the (consultation) room.

Realism

For as long as death is not incorporated in the conversation, we may continue to believe that life is never ending. You may state all you want about the quality of life and joint decisions in the consultation room on which actions to take in order to deliver “appropriate care”. Yet these statements will prove to be empty if they do not acknowledge the effects of the prevailing ideology of a “Can-Do society”.

Being a care ethicist at the Antoni van Leeuwenhoek cancer hospital and research institute in the Netherlands, I facilitate moral deliberation between doctors, nurses, and spiritual caregivers, as well as colleagues from non-direct patient care, such as lawyers and team managers.

Over the past three years, I have observed that our care is often overshadowed by a new mentality, characterized by and symptomatic of the “Can-Do society”. This dominant positivism influences decisions for both patients and caregivers.

Together both groups hope to find a cure – even in the face of difficult odds with existential consequences – yet more attention needs to be given to realism and to the rawness and harshness of everyday survival being a cancer patient, and to the recognition that life is finite.

Romantic?

Only when the unacknowledged tragedy of the situation can be openly discussed may we reappear as human beings in the consultation room, both patient and caregiver. We may speak romantically about the right conversation and appropriate treatment, yet is this good care?

In moral deliberation we reflect on the current era of emerging technologies with the promise of curing more and more cancer. However, it appears that we cannot yet do everything. And that fact needs to be stated as well.

The political emphasis on living healthily falls short of recognizing life’s capriciousness, uncertainty, and powerlessness.

For example, is a person saying “yes, I want that treatment” or does this person say “yes, I don’t want to die”? These are different answers, requiring different conversations. In this regard it does not help if the only social discourse is about resilience and healing as expressions of the successful life.

Quality

Quality of life is a compelling argument for the right treatment, or indeed, to not undergo any treatment. Quality of life I define by what is important to any particular patient in his or her particular situation. It is certainly a valuable concept that may help to look at the disease from a wider perspective.

Yet despite pervasive positivism, it is a romantic notion that the right treatment choice will obviously arise. Discussions in and outside the consultation room should rather address the false romance presented by a “Can-Do society” and encourage acceptance of life’s inevitable finality.

The right discussion could invite broader political discourse and public debate with regard to what constitutes good care. It would challenge existing sentiments and subsequently find its way into the consultation room.

This article is an adaptation of an op-ed by Tessa Roberts-Smorenburg which was published December 12, 2023 in the Dutch daily newspaper Trouw.

Note
((1)) In Dutch healthcare policy the dominant discourse is called “appropriate care”. This development emerged from other discourses such as value-driven care and positive health. Appropriate care as defined by ZonMW. ZonMw designs programs on behalf of the Ministry of Health, Welfare and Sports (VWS), the Dutch Research Council (NWO) and other organizations.